Abstract:
With the domestic and international proliferation of bio-
banks and their associated connections to health informa-
tion databases, scholarly attention has been turning from
the ethical issues arising from the construction of biobanks
to the ethical issues that emerge in their operation and man-
agement. Calls for greater transparency in governance struc-
tures, coupled with stern reminders of the value of main-
taining public trust, are seen as critical components in the
success of these resources. Two different approaches have
been adopted for addressing these types of ethical issues:
the first is a ‘top-down’ approach which focuses on develop-
ing policy, procedures, regulations and guidelines to aid de-
cision-makers. The second is a ‘bottom-up’ approach, which
begins with those who are most affected by the issues and
attempts to inductively develop consensus recommenda-
tions and policy. While both approaches have merit, I argue
that more work needs to be done on ‘bottom-up’ strategies
if trust and transparency are to be more than mere slogans.
Using 2 case examples from Indiana, the paper summarizes
data from a set of surveys we recently conducted that ad-
dress issues arising from biobanks that provide some insight
into issues associated with trust and transparency.
